We're just a regular family dealing with some extraordinary circumstances! Bryan & I married in June of 1999. We welcomed Zachary in September 2007 and Eli in October 2010. Eli was diagnosed with multiple heart defects when he was only 10 weeks old. We've been blessed in so many ways and despite the struggles we're a very happy family. We chose the title "With Every Little Beat..." because we've come to realize what a gift every moment truly is.

Tuesday, January 29, 2013

Late Night Ramblings from Eli

Hi, everyone. This is Eli. I think I'm a night owl these days and Mommy couldn't take it anymore. She's dozing beside me on the bed and left the computer open so I FINALLY got my chance. She even left the tv on for me. Unfortunately she didn't leave it on BabyTV (don't know what that is? Seriously? You must be older than five!). We're watching The Tonight Show with Jay Leno. It's okay. I think she was trying to bore me to sleep with the news that was on before it. That didn't work.

Now before you say she shouldn't have even had the tv or computer on if she was trying to get me to sleep, let me tell you something: I am the boss. Well, tonight anyway. Daddy tried. He laid with me for an hour and I didn't give in. He brought me back downstairs because he needed a break had to get to bed so he could go to work (he leaves early). We caught Mommy eating a snack so I demanded equal treatment. Three bowls of Honey Nut Cheerios later I relented to a diaper change and being toted back upstairs. Then, Mommy tried. We said prayers, watched a little bit of BabyTV (I'm tellin' you, it's got some of the best shows out there), and then she turned out the lights. That's our normal routine. I didn't feel like it tonight, but I let her think that's what was going to happen until the lights went out. I started crying. I cried harder & harder until she thought I was going to make myself sick (it happens).

So, anyway, she tried all these other soothing things to distract me. She turned on the computer so I could see pictures of me & my family. I liked that, but it didn't settle me down. She tried the tv again, but like I said before she tried some boring show. I'm pretty sure she thought that would work, but not tonight!

Want to know what I think is soooo funny about this? Well, I know my heart problems are not anything my parents would wish on anyone. It's stressful. That's one of the reasons they don't let me "cry it out" too much. I get sweaty, my lips & fingers turn blue, and I usually make myself sick if I cry too much. Most of the time we can work it out and it doesn't get to that point, but sometimes I just don't know what I want and I keep crying. Hey, it's tough to be a baby & figure everything out. It's even rougher when your body doesn't always allow you to physically do what your mind wants to do. Which brings me to what I think is funny about this: My silly parents thought that if there were any type of "advantage" to having a heart baby, it would be that I'd sleep a decent amount! Aren't they silly? Last night I was asleep by 10 (gave in too early last night). I was up by 7:30 this morning which is earlier than my usual. I took my usual nap today, but I'm still going strong! Bubba & I played a lot today. Aunt Kendra was even here and we played a lot. Mommy & Daddy thought for sure I'd be tired and could go to bed about 8:30. WRONG!!!!

So, here we are. Anyone have any questions for me? I don't know when I'll get the computer back but I'll try to answer them the best I can. While I have your attention I'll ask you to do some things for me:

Keep praying for me and all the babies, kids, and adults who have conditions like mine. I know you've been praying and I am so grateful. Please keep them coming.

February is Heart Month. The week of February 7-14 is Congenital Heart Defect Awareness Week. That's a big deal to us. My parents have been working hard on some things. I think Mommy's going to post about that soon so I'll let her tell you what she's been up to, but promise me you'll listen & help out. It's important to me.

Become an organ donor. If you live in Indiana use this link to register. Tell your family your wishes. Also, there's a petition going around to make the United States organ donation system an "opt out" instead of "opt in" system. My family & I think this is a great idea. It would save a lot of lives. If someone felt very strongly against having their organs donated they can just fill out a form to prevent that from happening. If you think this is a good system, please click this link to sign the petition.

Donate blood. Please consider donating blood the next time you're eligible. I've had to receive multiple transfusions after my two open heart surgeries. One adult donation could possibly be three units to someone my size. It's a big deal.

I'm starting to get sleepy now. It's not as much fun staying up if Mommy & Daddy aren't going to play. Bubba crashed hours ago....suck up.

Thanks for reading and check in soon to hear about my parents' plans for CHD Awareness Week!

1 comment:

Most children suffering from congenital heart defects don't look sick. You can't tell them apart from other kids, but their scars are very real. Most have faced more in their short lives than any person should. Beneath their shirts are battle scars, constant reminders of their battles to live. They have a strength, courage, and resilience that we can only be amazed by. Show our kids they are important, that their hearts matter. Support CHD awareness and research!